Chapter 4 ANSWERS TO COMMON QUESTIONS

The following are answers to questions we’ve heard from parents of children with DSDs.
Keep in mind that some other questions you may have might be answered in other sections of this book.
Check the Index if you don’t find a question answered here.

Cheryl Chase

QUESTIONS ABOUT GENDER AND SEXUALITY

Howard Devore, Ph.D., and Tim Shannahan

Q:

Should I dress my daughter in pink? Should I dress my son in blue?

A:

It’s really not necessary to go out of your way to dress your daughter in pink or your son in blue, although like a lot of parents you may feel that way. It’s also not necessary for you to
fight
the urge to dress a girl in pink or a boy in blue. How you dress your child and whether you give your child dolls or trucks is not going to simply determine the gender identity that your child will express. That’s because gender identity probably has a lot to do with what happened to your child’s brain prenatally (before he or she was born) and what’s happening with him or her in the world at large. What happened in the womb, what she sees on television, what she observes when you go grocery shopping will probably all affect your child’s understanding of gender and especially her own gender.

So you can feel free to dress your young child how you see fit, but know that your child’s
future gender identity may have little or nothing to do with the clothes or toys that you provide.
Basically, you should treat your child the way that you would treat any other boy or girl.
Feed his interests, and support him in those interests. Keep in mind that sometimes girls like
to play with trucks and boys like to play with dolls. Just because your child may engage in
activities that have, in the past, been viewed as inappropriate for his gender doesn’t mean that
he will reject his assigned gender. (And it certainly doesn’t make your child or you ill or freakish!)

There is a small chance that your child may come to realize that his assigned gender isn’t right for him.
Some people with DSDs (and some people without) decide to change their gender assignments,
and sometimes when they do that, they also decide to change their sex anatomies with surgeries
and hormone treatments. Most children with DSDs stick with the gender they were assigned at birth.

The sole responsibility of ensuring your child’s assigned gender doesn’t rest on your shoulders.
It isn’t your job to try to “make” your child fit a particular gender identity.
Your child will express to you what is right for him or her.

Q:

What’s the difference between gender, sex, and sexual orientation? How is gender assignment different from gender identity?

We don’t understand why some people are gay and others straight and still others are bisexual, but we do know that people do not choose their sexual orientations. And we know that people can lead happy, fulfilled lives regardless of their sexual orientation. Your child will always be your child, and we hope that you will always have a loving and supportive relationship. If your child comes to realize that he or she is gay, your love, understanding and support will be even more important given the prejudices of the society that we live in.

Just because your child has a DSD does not mean he or she will grow up to be sexually attracted to people of the same gender. Some researchers think that a few types of DSDs make people more likely to be gay, but the fact is that we just can’t predict the sexual orientation of any child for certain. You can’t look at someone’s genitals or genes or anything else and say with certainty if he or she is going to be straight or gay (or bisexual).

It might help you to know that the vast majority of people who are gay seem to have had the feeling from pretty early on that they were gay. Most don’t think their parents (or any other adult) simply “made” them gay. Some people think you can direct children towards particular sexual orientations by directing their interests. But we don’t think you can “make” a boy gay by giving him dolls any more than you can “make” a boy straight by forcing him to play football.

In fact, a considerable amount of scientific research has failed to find any differences between the way people who are gay and people who are straight were parented. And, very importantly, research suggests that no therapy or other intervention can change one’s sexual orientation even in individuals who want to change for religious reasons or to be accepted by their families. We know adults who were very damaged by therapies aimed at changing their sexual orientation. They were hurt especially by the feeling that they were not acceptable to their families as gay.

We also know adults who are gay who have felt hurt and distanced from their parents when their parents have criticized them for being honest about their sexual orientation. This can lead to a lot of problems for the child and for the child-parent relationship. Young children and teens who feel that they are disappointing their parents will sometimes do things that hurt themselves in order to try to “make it up” to their parents, and they may resent their parents for that later. We also know that many people who are gay fear rejection from their families or are too ashamed to come out to their families. These people may either distance themselves from their families or conceal their romantic loving relationships from their families. (Can you imagine what it would have been like for you as a teenager/young adult if you could not have spoken with your parents/family/friends about your boyfriends/girlfriends, the joys and problems of your relationships, your engagement and marriage?)

Those with DSDs have sometimes agreed to medical procedures (like sex hormone injections or genital surgeries) just because they have felt so bad that they were gay. Similarly, some went overboard trying to be the best at everything at school (sports, grades, etc.) to try to “make it up” to their parents that they were gay. They hoped that doing those things would make things better for their relationship with their parents.

If your child turns out to be gay, we think it is best that you accept that and resist
the urge to look for a reason he or she is gay. We tend to look for explanations for things
that we can’t fully accept. In that sense, looking for an explanation often means looking for
something or someone to blame. Blaming yourself or your child for something that cannot be changed
and that neither of you chose can only be hurtful.

Just like people who are straight, people who are gay can be healthy, loving, and loved.
They can succeed professionally and socially. They can become parents (and sometimes do so
through natural parenting or adoption). And whether or not your child is gay, he or she will
be your child throughout your lives together. Accepting your children regardless of their sexual
orientations will mean that you are keeping intact that relationship of parent-child love. We know
sometimes it can be hard for parents to accept that their children are gay, but we encourage you,
if your child is gay, to accept and love him or her just as you would any other child of yours.

Iain Morland, Ph.D.

Q:

What if my child seems to be expressing a gender other than the one she or he was assigned?

A:

Almost all children occasionally show interests that seem to be typical to the “opposite sex.” Some children with DSDs have more than the average cross-gender interests. And sometimes parents of children with DSDs just notice these cross-overs more, because they are aware of their children’s atypical development.

Most children with DSDs will remain in the gender identity assigned to them at birth, even though they may act in ways that seem unusually girlish for a boy, or unusually boyish for a girl. But just because your child does this doesn’t mean she or he got the “wrong” gender assignment. See Chapter 2 YOUR CHILD’S DEVELOPMENT, AND HOW TO TALK WITH YOUR CHILD for more about this.

Rarely but occasionally a child will consistently express a gender identity other than the one he or she was assigned. When this happens, it is often pretty clear; a child may announce in a very strong way “I’m a boy!” or “I’m a girl!” and suggest a new name by which he or she wants to be called. A child who feels he or she is labeled incorrectly may feel misunderstood or confused.

In the event you think your child may have been gender-assigned incorrectly, ask your doctor for a referral to a child psychologist or child psychiatrist who specializes in helping children with gender identity issues. Then talk with that professional about your concerns, and about how to be supportive of your child. If you think your child is going to transition gender assignments, then the gender transition should be managed by a health professional experienced in this area, even if it means traveling to another town.

Although children often seem to find gender reassignment a relief, because they feel their social identities are finally lining up with their self identities, parents often find children’s gender reassignments stressful. That’s because the parents’ identities are changed at the same time. Parents who are helping a child with an uncertain or transitioning gender should be especially sure to take care of their own well-being by seeking support as needed from peers, peer support groups, and mental health professionals. Remember: You deserve support and care, just like your child does!

Q:

My child seems not to be fitting the gender assignment that was given in infancy.
How can I find a child psychologist to help us support our child?

QUESTIONS ABOUT GOOD PARENTING AND SPOUSAL RELATIONSHIPS

Q:

I have some negative feelings about my child’s DSD. Am I a bad parent?

A:

No! See Chapter 1 WELCOME TO PARENTS for information about why you may be feeling badly, what to do with it, and why it is common for parents to feel sad, anxious, angry, or confused about their children’s DSDs.

Q:

Is it normal for me to go through a range of emotions, including blaming myself that my child has a DSD?

You and your spouse are different people with different experiences and concerns. Even though you may both love your child, that doesn’t mean you both feel the same way about your child, your child’s DSD, and your child’s medical care. We encourage both you and your spouse to read this book so you can have a common ground for talking about these issues. We also encourage you to read what parents have written in Chapter 6 THOUGHTS FROM FELLOW PARENTS AND FROM ADULTS WITH DSDs about these experiences. If your differences are causing you a lot of stress, consider finding a couples counselor to help you.

Cheryl Chase and Robin Mathias

QUESTIONS ABOUT MEDICAL CARE AND SURGERIES

Q:

What counts as an “elective” medical procedure?

A:

An elective medical procedure (for example, an elective surgery) is one where there is no emergency. An example of an emergency surgery would be a surgery to make a urinary opening (a “pee hole”) for a child who was born without one. An example of an elective surgery would be a surgery to make a girl’s clitoris look smaller.

Q:

How do I decide about elective surgeries?

A:

When making medical decisions for your child, you will want to consider what is in his or her best interest. That means you will want to consider what is going to be best for your child in the long run.

Parents who choose elective surgeries before their children can decide for themselves hope that the surgery will be better for the child than waiting. In cases of DSDs, the parents typically choose early surgeries because they hope they will spare their child any embarrassment or shame about looking different. They may also feel they are saving the child the difficulty of having to go through it later, when the child is more aware of what is going on. They may also believe the surgery will turn out better if it is done when the child is an infant or toddler.

Parents who choose to wait until their children can decide for themselves hope that waiting will be better for the child than doing the surgery before the child can decide. These parents typically wait on surgery because they hope to give their children a consistent message that they are acceptable as is, because they do not want to take on the risks associated with surgery, and/or because they believe their children should be in control of their own bodies in this case. They may also be concerned that doing the surgery before the child can decide will not take away the hard emotions the child may feel later, when he or she finds out what his or her parents decided. They may also believe that the surgery will turn out better if it is done when the child is older.

In the past it was common practice for surgeons to remove any gonads (testes, ovaries, etc.) that did not match a child’s gender assignment. Surgeons also sometimes took out gonads if they thought there was an increased risk of the gonads becoming cancerous.

There are benefits to leaving functioning gonads in: (1) Leaving them in may allow a child to undergo a natural puberty,
rather than a puberty brought on by hormones prescribed by a doctor. Many adults with DSDs suggest that natural
puberties are significantly less stressful than medically-produced puberties. (2) Although it is true that with today’s
technologies, your child may be infertile, with improved reproductive technologies your child may be able to
have biological children in the future if she or he still has his or her gonads. So, for example, some people
think that in the future women with androgen insensitivity syndrome (AIS) will be able to contribute material
from their testes to make a baby that is carried by a surrogate mother. If the gonads are taken out, those
gonads obviously will not be available for possible fertility treatments when your child is grown up.
(3) People who have had their gonads taken out usually need to go on hormone replacement therapy (HRT)
for the rest of their lives to prevent osteoporosis (a bone-wasting disease). Leaving the gonads in may
mean they can have healthy bones without medicines and those medicines’ “side” effects.
(4) Many women with complete Androgen Sensitivity Syndrome say that, after their gonads were removed,
they lost much of their libido and a sense of well-being, and that HRT never restored these things for them.

If a gonad is cancerous, or has a high chance of becoming cancerous very soon,
obviously you will want to consult a surgeon about having the gonads removed. The risk of cancer is different for
different kinds of DSDs.

If a child is entering puberty and has a kind of gonad that is making her or his puberty go the “wrong way,” you should give the child the option of having the gonads out. (For example, a girl with 5-AR Deficiency and testes might start turning more masculine when she starts puberty, something she may not want. Her parents should talk with her and her doctor about her options, including medicines to delay puberty if she’s unsure of her gender identity, or surgery to remove her testes.)

If a gonad is not cancerous, talk to your child’s doctor about the option of “watchful waiting.”

Why might I want to wait and let my child make elective medical decisions for himself or herself?

A:

In its policy on informed consent and children’s participation in decision-making about their own medical care, the American Academy of Pediatrics (AAP) says, “Parents and physicians should not exclude children and adolescents from decision-making without persuasive reasons.” The AAP suggests a number of reasons why it is a good idea to let children participate in decision-making about their medical care:

Trusting and supporting your child in this way helps him or her develop as a person.

To be blunt, it is your child’s body. He or she is going to be the one who has to experience the physical and emotional costs and risks of medical interventions. Letting him or her make decisions about his or her own body shows respect for your child’s sense of self and his or her autonomy.

Helping your child make important decisions responsibly teaches him or her to make other important decisions responsibly.

We would add that trusting your child in this way builds a relationship of trust between the two of you.

Whether or not individuals with DSDs are able to have biological children depends on their particular condition and medical histories. It also depends on what reproductive technologies will be available when your child is deciding whether to become a parent. Although some children may now be considered infertile because of their DSDs, improved technologies may make it possible for them to become biological parents years down the road.

If infertility is likely to be an issue in your child’s case, it is never too early to be honest and begin to talk to him or her about other ways to be a parent. Be guided by what you think your child wants to know. And as you answer your child’s questions, remember that your relationship is an emotional one, and so it is not surprising that you may feel sad or protective as you talk.

It is a good idea to prepare your child for upcoming visits to the doctor by telling him when the appointment will be, who it will be with, and what will happen at the appointment. You can help your young child prepare for a doctor’s visit by acting out the visit with a stuffed animal or doll; have your child pretend to be the parent taking the animal or doll to you, the doctor. Explain what is going to happen, and act it out on the animal or doll. Then take that animal or doll with you to the actual appointment.

Repeated visits to doctors can be stressful for children, especially when there are genital exams. Work with your child’s doctors to figure out a way to have as few examinations and procedures as possible; figure out what is really necessary.

Trust your parental instincts when it comes to figuring out what is working or not working for your child in terms of her health care. Even if you are using the services of a teaching hospital, you can choose to limit how many students and trainees attend your child’s appointments. If you sense that your child’s privacy or dignity are being harmed by the way a visit is working, make everyone pause and see what you can do to make your child feel safer.

As your child grows, encourage your child and her doctors to talk directly with each other. This will help your child understand and eventually take charge of her own medical care. It will show your child that you believe she can take good care of herself. Once your child reaches adolescence, give her the chance to talk privately with a trusted care provider. That way she can ask about issues (like sexual function) it may be difficult to discuss with you or in front of you. Let your child decide which care provider that will be.

My child’s doctor doesn’t seem to know enough about my child’s DSD. What should I do?

A:

Start by looking for more information about your child’s condition by going to a library (medical libraries are especially helpful; ask for help from a medical librarian) or using the internet. Seek out information from support groups. If you find out that your suspicions seem to be right—that your doctor doesn’t seem to know as much as she should, you may help educate her by asking to talk with her about what you’ve found out. Offer it politely as information you would like to go over with her. If this encourages her to do more research, then you might decide to stick with her. But if you feel she just does not have the experience or the knowledge or the skills your child needs for optimum care, seek out a different doctor through a second opinion. You may find that, if the second doctor is far away, she is willing to work with the first doctor who works near where you live. Or you may need to resign yourself to long-distance care. Support groups often have good information about which doctors parents have found the most experienced, knowledgeable, and supportive.

Q:

My child seems depressed. What should I do?

A:

If your child seems sad and withdrawn, or is having problems with eating or sleeping, he or she may be depressed. Consult your child’s doctor and ask for a referral to a mental health specialist (a child psychologist or child psychiatrist). Also look to Chapter 2 YOUR CHILD’S DEVELOPMENT, AND HOW TO TALK WITH YOUR CHILD for ways to talk with your child about how he or she is feeling.

Q:

Is my child’s condition hereditary? Could I have more children with the same condition?
Might other members of my family have the same condition?

A:

The answer to this question depends on your child’s specific DSD. If you are concerned about this, ask your doctor to help you find out this information. You might also ask to be referred to a genetic counselor who can help you understand the cause of your child’s DSD.

Should I try to get my child excused from gym class so he does not have to change in front of the other kids in the locker room?

A:

Your child should not have to be excused from any activity that other
children participate in simply due to his or her DSD. If your child does not feel comfortable
changing in front of the other classmates, work with the school to see to it that your child has
access to a private shower or changing space. Talk to your child’s teacher by using the material
provided in the section called “Tips on Interacting with Teachers and Daycare Providers”.

Keep in mind almost all children are teased at some point in their lives by peers.
Kids get teased for being what others consider too tall, too short, too thin, or too chubby.
There is a chance that your child will be teased because he looks or acts unusual for his
gender or sex. One of the best things you can do for your child is to sit, listen, give hugs,
and repeat back what your child has told you so that he knows he has been heard by you.
It can help to remind your child that lots of kids get teased about numerous things and
that sometimes kids can be very mean, even cruel. Don’t try to make your child’s pain
magically go away with sayings or sugar-coating; this will just make your child feel
like he can’t tell you about it if it happens again. Your child, like other children
who are teased, will have to work through his pain and grief. This is something we all
have to struggle with as people. With support from you and other resources suggested in
this book, you can help to ease your child through the process of growing up.
Your child may benefit from help from a counselor in learning how to develop the skills to deflect teasing.

Realize that your child is not the problem: the teaser or bully is!
If it persists, talk with your child’s teacher or the school administrator about the bullying
and how to limit it. Your school should have systems in place for helping all children
feel accepted and welcomed. And when bullying is reported, they are obligated to conduct
an investigation. If the child was indeed bullying, then sanctions will be put into place to limit inappropriate behavior.
Most schools also try to increase diversity awareness and education to the school at large.
Regular programming about diversity can help your child and
others develop the verbal tools they need to combat people who want to discriminate against
them for being in a minority. Incidentally, one psychologist who works with families with DSDs
remembers that, when she had to light a fire under a school administrator over a case of
persistent teasing, it helped to remind the administrator that school districts have lost
big civil suits over failing to protect children from persistent bullying or teasing.